A man walks into a WEF restaurant and asks, “What’s good on the menu?”
All he hears is…
A man walks into a WEF restaurant and asks, “What’s good on the menu?”
All he hears is…
I’ve been feeding the beast of exigency for about a year, now… watching it just lie there and breathe fire at random intervals… learning its patterns… learning my own patterns.
I now know how to rest myself enough to keep going, even though my baseline is exhausted.
I now know how to systematize all the shit I have to do to keep my partner alive and keep myself breathing, too.
I now know how to get the doctor’s attention, so she doesn’t keep killing my partner.
I now know how to get food in the house, take the trash to the dump, and satisfy the basic needs I’ve identified as essential, all while dealing with someone’s constant, continous, every-5-minutes-need-something-new rolling demands.
I know how to feed that beast.
Now it’s time to feed a new one – the beast that’s not just about survival, but about being brutally decisive about What Matters and What’s Not Worth A Moment’s Thought. The beast that knows how to protect itself from a whole wide range of bullshit and keep going, oblivious to the follies of others. The beast that knows about the most critical parts of life and knows how to keep them close, so others can’t step in and ruin them – as they love to do.
Jealous. People are jealous. They covet. And the love to kill what they can’t control. Fuck ’em.
I’m feeding my beast that knows how to fend off those fuckers and let me get on with my life.
I’ve been away for a while.
I’ve been busy caregiving for my disabled partner, who nearly died last March.
Over the past year, I haven’t gotten much sleep – she’s needed ’round-the-clock care, which means I’ve been up and awake each night, every 30 – 90 minutes. I think the longest I’ve slept at a stretch has been maybe 2.5 hours, when I was taking care of her.
Friends and other caregivers have come intermittently to provide respite. Getting a full 8 hours (plus) is magical. That happens between 1-3 times a week. 3 is rare. It’s if I’m lucky.
And people love to tell me all about how detrimental sleep deprivation is to your system. No shit. It’s classified as a war crime for prisoners of war. That’s pretty much what I’ve been – a prisoner of war, since a whole shitload of WWII trauma from her father is behind what caused this whole health crisis.
It’s going on a year, now, since this started. It’s old. I’m worn. And nobody better tell me about how much the body needs sleep – unless they can come to my fucking house and stay up all night with this woman, so I can sleep – and work full-time every day of the work week, which I do.
Anybody who comments here about how much I need sleep is getting their comment removed. I already fucking know it.
But you learn a whole lot, when you’re crushed into small pieces, shaken up, and coughed up again by life.
Here’s a short list of the first ten lessons that come to mind:
There are more – many more – lessons I’ve learned. Mainly, that this shit is not a “marathon” like some people say. It’s much, much more.
Last night, Friday night, I wrote this, thinking I’d publish it:
I’m done. At least, that’s how I’m feeling today. I may feel very different tomorrow, but right now, I’m feeling done.
Wiped out. Completely drained.
Even the things that normally bring me joy are just now… well, they’re just there. And for the most part, I’m purely on autopilot.
I know I need to make some significant changes in my life, particularly around my job. But I’ve got nothing left for that. I don’t think I could start a new job, if I wanted to. I’m just so worn down to nothing.
Of course, it would be nice if I could just quit my job, but I have responsibilities I need to keep up with. Someone depends on me to stay alive, and that person is cognitively and physically declining. Rapidly.
I have to keep going for them.
So, I shall.
This morning, I woke up feeling a lot less desperate. But my situation has not changed so terribly much. I’m still married to a cognitively and physically declining spouse. She still needs me to keep going for her. I’m still struggling with my work. I still would love to leave my job and dedicate my attention to a smaller subset of Very Important Things. I have deep and abiding reservations about, well, everything. And there’s not much that I really feel I can do about much of it, at all.
I’m just stuck here, where I am. Locked down in a pandemic – since last March, I’ve basically been locked down, which may have kept me healthy, or it may have been a poor use of time. I’ll never know. All I know is, I’ve been plugging right along as best I can, making what I can of life as it comes… taking care of, well, everything. Following my best judgment, in terms of how to keep safe and clean and healthy… not always doing the best job of it, but then, what can you expect?
What can any of us expect? What, indeed?
I have an exercise bike in my house. It’s in the living room that we rarely use, except as storage, because we have a family room on the other side of the house that’s much more cozy. And we have a lot of stuff we’ve needed to keep on the ground floor, because once upon a time, when my partner was still mobile and not in crippling pain, we produced events. A lot of events. Obviously (for us, not for the rest of the world), that hasn’t happened in, like, a year, because we’ve been overly cautious, and her pain has been increasing. But anyway, there’s this whole room in the house that has a bunch of stuff stashed there, and the exercise bike is there. My weights, too — nothing dramatic, just a bunch of dumbells and some plates for adding 5-10 lbs to some of my free weights. I haven’t used those plates in some time. I haven’t felt like it.
There’s a lot I haven’t felt like doing, over the past year. We relocated while our house was being worked on, last spring, and the smaller space where sound traveled easily made it less convenient for me to exercise. I could have done it, sure. But I didn’t. Because I didn’t feel like it. Depression and all that. Overwhelm and all that. Taking care of things, managing the contractors from afar, holding down my full-time job as best I could, and carrying on with some other personal projects I had happening.
Lord, when I look back, it was a massive flurry of activity. For months. And then the move back home, the unpacking boxes and adjusting to the new look of the house, the new configuration, calling the contractor to fix the new things in the house that kept breaking, and, well, everything.
And then my partner started to decline. More… and more… and more… all the while, in increasing pain that I couldn’t stop, with more and more symptoms that I didn’t even know about (she didn’t tell me) until they were too big to turn the clock back on.
So, yeah, it’s been a ride. And it continues to be.
Small wonder, I was at my limit, yesterday. I cycle in and out of being at my limit. I cycle in and out of hope and despair and all the stuff in between. Get some rest. Build myself back up. Have a good meal. And then wear myself down, all over again.
This post feels like it’s going nowhere, so I won’t waste anybody’s time with it, anymore. It’s just here – this constant sense of never getting ahead. And even when I do get ahead, I slip back. Again and again and again. Because that’s just how things go, when things go like this.
So, keep on. Just keep on. It may not get much better, but chances are, it’ll get different.
I don’t like Substack. There, I’ve said it. I don’t have as much functionality there, and frankly, I don’t want to have to curate an email list in addition to posting. WP actually ties everything together nicely.
So, truce (for the time being), since I can do everything I need to here with the &classic-editor addition to the end of the editor URL.
Re-learning everything, especially when I have limited time, to begin with, is just a pain in the ass, and I’m not feeling very generous, right now.
Here I am. Begrudgingly, but still here.
Finally – finally (!) I get some time to myself, to zone out, to get into a flow state, to center in and reconsider my life. Or rather, have an uninterrupted block of time to consider what I’ve been considering, but haven’t had time to act on.
I really been needing things to change, work-wise, and I’ll have a chance to decompress and really think about where I want to go with my work. I have to say, I’ve never been very career-minded. I’ve been connected to my work, for sure. Web development and technology design are in my blood, and I love it with a fierce, burning pride that I don’t often see in others – even in people who have been doing this for a while.
But I’ve never actually felt a connection with the people who cut me a paycheck, every week or two. I’ve never really felt like I was part of their plan, and I never really felt like they had a lot of loyalty to me. Their loyalty was always to themselves, and while I know that it sounds incredibly naïve, I could never understand why I was expected to have undying loyalty to them, when they wouldn’t reciprocate.
Call me silly, but it just seems equitable for the recipients of something as valuable as your loyalty and most of your valuable waking hours every day – that is, your life force – to show at least a little loyalty in return.
I’ll admit, I have gone through a number of different, shall we call them “attachment cycles“ to the places where I worked. At one place, I was heavily invested in what they were doing, as well as what I was doing for them, and I believed in the products and services we were offering. It was clear to me that my work each and every day really furthered things in a good and positive way. The applications I was building, the initiatives I was leading, and the end result of what we were building… It all actually did matter. Millions of people really benefited from the great job we did. It wasn’t perfect, but it was pretty good. And much of what I helped to build is still in place, although you can’t see it on the surface.
The thing is, that was 15 years ago. And over the last decade and a half, a lot has changed in terms of how the Web works, who’s working on it, how people learn and how people implement things. I have to say, I just don’t agree with a lot of the changes that have happened. The frameworks people have embraced, which have made the whole lot of us more vulnerable and brittle. The shortcuts that promise to do things for you more quickly, so you save time and money. The services that prevent you from learning How Things Work, in return for delegating important functionality to that service. I think so much of it has been driven by organizational considerations, larger political aims that forge alliances across countries and companies, and which are geared more towards furthering shared economic interests than building good technology.
We’ve come quite a long way, I have to say. And it hasn’t always been fantastic.
Just think of the hack that’s been going on since last March. If so many companies hadn’t delegated critical functionality to One Single Company, would we be as compromised as we are? Well, let’s not talk about that now, because at this point, I’m not sure anybody knows how compromised we are – and the people who would know, certainly won’t tell us, because we’d probably all freak out.
Anyway, despite 3+ decades of investment in technology and keeping on the cutting edge, I now I find myself increasingly pushed out of the world that I helped build. People young enough to be my children are going out of their way to tell me that I don’t know what I’m doing, even though I made the mistakes that they’re making along time ago, and I pretty much know how it’s going to turn out. They have no idea how much I actually do know. And they don’t want to hear from me. They want to make their own mistakes. They don’t want to learn from others to save themselves the hassle – much as many of us would love to spare them. They’d rather just do it themselves.
So, I’m inclined to let them do that. I mean, why stay attached to something that no longer has a need for me? Why keep trying to connect with people who have no interest in connecting with me?
It’s just not a good use of time for any of us.
That’s why I’m so excited about the next two weeks. I will have time to putter and explore. I’ll have time to install different applications on my various laptops and try out different things, without having to worry about the time constraints. Christmas is going to be very low-key this year, since we’re not going anywhere and nobody is expecting us to. In the past, it was fairly time-consuming, just staving off all of the invitations and the protests and the pressure to go visit people. It takes a lot of energy to constantly tell people, “No. I told you last time. No, we’re not coming to you over the holidays.” This year, there’s none of that arguing, so that actually leaves me a lot of extra bandwidth.
Since I’m not going to the post office to mail out packages, that means we didn’t actually buy any thing that we need to package up. And since it’s just the two of us at home, and my partner has been really sick for the last few months, we just haven’t had the energy to really do the whole Christmas thing. It makes me sad that she’s been so sick, and things don’t look good. But the bright side of that is that I don’t have to run myself ragged, making everything Christmassy, which I don’t really like, anyway.
Come to think of it though, I should probably do a little something for her this year, since I’m not sure that there will be more Christmases with both of us, after this year. Her health is very bad, and even when she rallies to do things with other people online, it really takes a lot out of her, and she has to recover for several days after the fact. A 90-minute Zoom call with friends wipes her out. It’s bad. And she won’t see a doctor. Flatly refuses. When she does talk to people about it, she hides her symptoms. Including with me. I’m at a complete and total loss.
So that’s really depressing. And when I look at the last several months, looking at how I’ve struggled to do things that I used to really enjoy doing, I realize that I’ve been intensely depressed. Of course, I’ve been disciplined about my life, with regard to the things I have to get done. Me being depressed doesn’t change the fact that the bills need to be paid, and food needs to be cooked, and the clothes need to be washed. I think I’ve just been depressed for so long – as long as I can remember, actually – that I’ve just figured out how to keep the essential things going, which is more about the most basic self-preservation, than an interest in keeping everything running smoothly. After all, having to catch up with stuff that I put off is even more demanding than just doing it while I’m depressed. So I’m just saving myself time in energy by taking care of things pretty much when they need to be taken care of, never mind that there’s no joy in any of it, and I’m just going along rote.
Even though I’m incredibly depressed, and I go for long stretches where there’s just not a whole lot of joy in my life in general, that doesn’t stop me from living my life. And in fact, it doesn’t stop me from finding some pleasure in some things along the way.
Well, I don’t want to talk about that anymore, because talking doesn’t really change anything, and I don’t want to burden other people with stuff that’s just mine. Things are hard. So what else is new?
I am really excited (in the midst of this dragging depression) about just having the freedom to work on some of my skills for the next couple of weeks. I definitely need a new job in the new year. I haven’t felt connected with anybody at this current for quite some time, and the next generation of people coming in are more than happy to push me out of the way. The company where I work, I now realize, is way too big for me. It’s enormous. Once upon a time, I was fine working at companies that were that big. But over the years, I’ve become so much more experienced in so many different ways, that staying employed as a highly specialized cog in a vast array of machinery… well, that just doesn’t work for me anymore.
When a company gets this big, and there are a lot of established organizations, everybody has their specific role, and nobody is allowed to do anything different than their one specific role. That just doesn’t suit me, because frankly, I can do a number of different jobs more than adequately, and I have a whole lot to say about those different areas of experience. I have thoughts. And I share them.
But when I speak up, it’s seen as a threat I’m drifting into other people’s territory. I’m not staying in my own lane. And while I understand why it is so important for specialists to stay in their area of specialty, that just doesn’t work for me, anymore. I have too much experience, I have too much insight, I have too much else to contribute. I’m not being conceited. This is an objective fact, and people I work with have told me that my experience is wasted on my current position. So I have external validation, which is nice.
I’m really torn about whether I want to stay in high-tech or not. I think the money is going to keep me here, but I have to find a way to work in it that’s not going to lock me down in front of a computer every waking moment of my day. Years ago, I was fine with sitting in front of a screen for 10-12 hours at a time, building the things.
But now, the thought of just sitting in front of a glowing screen for all those hours, each and every day, kind of horrifies me. There is so much more to do in life. Plus, if I sit that long, then the pain sets in, and then I can’t sleep, and then I can’t think, so it’s a vicious cycle. It’s really a conundrum, because I love getting into the flow of coding and working on my computer. But if I stay in the flow too long, which is not necessarily something I can control at will, it can really take a toll on my body and mind.
So you see my conundrum.
Well, I have a couple of weeks to just live my life the way I would prefer to live it, and I can design a schedule that works for me, kind of as a template for how I want to live my life next year. I’m not going to bother with New Year’s resolutions, because it never pans out. Ever. And then I feel like a total failure by the time February rolls around.
So, I’m just going to figure out how I want things to be in my life, right here and now, and take steps to make sure I can keep doing them as the weeks and months roll by.
And I’ll enjoy what I can, while I can.
Oh, how ironic it is. It’s 2020, and “we’ve come a long way, baby” in terms of how people talk about and conceptualize autism. Well, some of us, anyway. People are catching on to Dr. Damien Milton’s “double empathy” concept, and people are actually starting to talk about autistic folks as, well, autistic folks – not the helpless victims trapped (Trapped, I tell you!) in a body wracked by Demon Autism Spectrum Disorder. Hey – that’s catchy! Maybe we should start calling it DASD… but I digress.
And yet, research keeps getting done that not only perpetuates stereotypes, but also feeds on them. I’m referring to the infamous (for those of us on Twitter) paper Attend Less, Fear More: Elevated Distress to Social Threat in Toddlers With Autism Spectrum Disorder. put out by the Yale Child Study Center. It’s been getting quite the thrashing, lately. So much, that the Yale CSC put out a response to the hullabaloo Statement Regarding Recent Peer-reviewed Study Published in the Journal Autism Research
I’ll get to that later. There’s a lot to unpack.
Now to the first order of the day. I got myself a copy of the paper, and when it comes to stereotypes and severely limited concepts about autism, it does not disappoint. There’s a plethora of them – starting from the very first sentence! Behold (problems are in bold):
Differential emotional reactivity to social and nonsocial stimuli has been hypothesized but rarely examined empirically in ASD despite its potential importance for development of social motivation, cognition, and comorbid psychopathology.
Hm. First, okay, clearly they’re studying a disorder, versus neurodivergent children. If they were studying the children, they’d say “examined empirically in autistic children” or “in children on the autism spectrum”. But they don’t.
Further, they reference “comorbid psychopathology”, which clearly places autism (or ASD, in their case) in a “morbid” (i.e., sickness) category. You can’t have a “comorbidity” unless you have first a “morbidity” to “co” it with. It would also seem that they’re labeling autism a “psychopathology”, but I’m going to be generous here and let them off the hook for that, since that other morbidity may be a psychopathology, but autism would necessarily need to be one, for that sentence to work.
And that’s just the first sentence. You’d think they’d never talked to a real live autistic adult…
But it gets better.
This study examined emotional reactivity, regulation, and attention to social and nonsocial threat in toddlers
Please tell me they didn’t decide to threaten toddlers in the name of science, just to see what would happen… Toddlers. Helpless, vulnerable toddlers. Not just autistic toddlers, but “typically developing” toddlers, as well. Did they not check with anyone before deciding this was a good idea?! Honestly.
And here, let me go off on a useful tangent about what makes this so painfully ironic. In his 2011 book The Science of Evil: On Empathy and the Origins of Cruelty, Simon Baron-Cohen explicitly talks about how autistic people lack empathy. Yeah – that thing that makes us uniquely human, we don’t have, according to the book. The good news is, we can’t be psychopaths, because psychopaths actually know that they’re hurting someone, whereas autistic people… well, we just have no clue. Hm. Okay, I suppose that’s magnanimous of him?
Anyway, the irony is that the real empathy deficit seems to lie with researchers who thought that frightening toddlers would make an interesting topic of study. And with the review board who said, “Oh, yeah! That sounds intriguing, go for it!” And with everyone who was involved in that. Because if you can genuinely empathize with someone, to the point that many, many autistic people actually can, are you going to spend – literally – hours inducing fear in 42 autistic kids and 22 non-autistic kids under the age of 2?
Well, they did. And “did” rhymes with “livid”, which is what I’ve been about this particular study, pretty much all day. (Still am.)
In response to social threat, toddlers with ASD exhibited elevated iDistress [intensity of distress] (P < 0.038) but lower Attention (P < 0.002) and a wider variety of ER strategies (P < 0.040) compared to TD controls, though their ER strategies were less likely to be social.
So, autistic kids were more intensely distressed. They had to actually terrify them to find that out? Any autistic adult can – and will – tell you about the intensity of our distress. But no. They had to put some numbers to it.
And what’s with the “lower Attention”? How would they know? I’ve lost track of the times that people have accused me of not paying attention, when I was picking up every single thing that was going on around me – and then some. Actually, I was picking up more than they were. But they didn’t realize it. So they thought I was zoned out, or something like that. Augh!
There’s more to unpack just in the abstract, but let me just put the “Lay Summary” here:
Compared to typically developing toddlers, toddlers with ASD show diminished attention yet enhanced distress in response to social threat. Poor attention to potential social threat may limit opportunities to assess its threat value and thus contribute to often observed negative emotional responses to novel social situations. Identifying the precursors of atypical emotional reactivity in infancy and its links with later psychopathology will inform about novel treatment targets and mechanisms of change in the early stages of ASD.
“Poor attention to social threat” misstates what’s going on, I believe. As I mentioned above, it can be more about us attending to everything, not just people. But it’s not just about “observed negative emotional responses to novel social situations”. Rather, it also ties into failed assessments of actual threat that lead to assault (of all kinds) and other genuinely dangerous situations.
Warning, Will Robinson! Danger! on that last line. If they don’t understand the nature of our attention and our distress, they’d better damn’ well not be coming up with “novel treatment targets and mechanisms of change”. Especially for “early stages of ASD” – which would be when? Prior generations that pass along the autism? Yeah…
Getting into the paper proper… Good lord. I can’t even. I’ll spare you my rant on the first paragraph. Let’s just say, “Whole lotta pathologizin’ goin’ on”.
2nd paragraph gives me a glimmer of rare hope, for a perhaps unexpected reason:
Despite the potential importance of emotional reactivity to understanding the complex phenotypes and clinical needs of children with ASD, to date, very few studies have focused directly on this topic. Even fewer have assessed whether trigger characteristics (social vs. nonsocial threat) differentially affect children with a social disability.
It sounds to me like prior researchers were like, “Hey! Let’s experiment on toddlers!” Then they thought about it and decided, “Yeah… let’s not do that.” And that’s good. The thing is, this paper is talking about the “clinical needs of children with ASD”, as though the ASD is the problem and it’s separate and apart from the kids themselves. This kind of perspective makes it possible to “love the sinner, but hate the sin”, somewhat akin to “saving” medieval “witches”by dropping them in water. If they sank and drowned, woo hoo! That proved they were not in fact possessed by The Devil. Of course, if the floated to the surface, they were burned at the stake, so they were screwed anyway. In a less extreme corolary, let’s talk about my evangelical fundamentalist Christian family who took me to church where people said (and I quote), “If my son were gay, I’d rather that he die of AIDS, than keep living his life in sin.”
Strains of the idea that an autistic person is somehow victimized or oppressed or possessed by Demon Autism show up in the concept of “clinical needs of children with ASD”, making it easier to see how they could disconnect themselves so completely from any empathetic (or even sympathetic) impulse while terrifying the toddlers.
But alas, after the initial regret about the dearth of data on terrified toddlers, the authors go on to list a bunch of researchers who did indeed experiment on developmentally delayed kids and autistic children. So (sarcasm) there’s hope yet for the data.
One of the hallmarks of ASD is limited selective attention to people observed in the contexts of virtual or reallife interactions
They cite a prior (2012) paper by two of the authors in this, so I dunno if that counts as confirmation bias, or what, but again with the lack of understanding about attention. If we are literally (and autistically) picking up on every available stimulus in the room, somehow selective attention to people would only provide part of the information we need to interact with our surroundings. Right? This is not pathology. This is how we are in the world. That doesn’t make us disordered. It makes us very, very busy trying to figure shit out. The authors seem to have a real problem with this.
While toddlers with ASD do not avoid looking at social stimuli (e.g. faces), under certain conditions they fail to increase their attention to faces in a manner observed in typically developing (TD) and developmentally delayed toddlers
Yet, clearly, according to the paper, our differences make us disordered:
These findings indicate that the intrinsic value of social stimuli for guiding behavioral responses (or salience) … differs fundamentally between those with and without social disability
Okay, I’m going to stop with this, because it’s an odious rathole. Let’s get down to their methods and whatnot…
The present study addresses several key gaps in the evidence identified above. It investigates the effects of group (ASD, TD) and threat type (social, nonsocial, ambiguous) on intensity of emotional distress, visual attention, and the ER strategies used. The stimuli aimed to elicit fear were adapted from the Lab-TAB – Locomotor Version
I don’t think I need to go into all of this in great detail, dear reader, because you get the point.
The whole reason for this study was to threaten small children in order to elicit intensely emotional distress. Stimuli were deliberately aimed to elicit fear. Think about that. Just think. The fact that’ there’s an actual formal test that they adapted it from… well, that makes me wonder. A lot.
The sample was ascertained at the earliest time when autism can be first reliably diagnosed, and the emotional expression of the toddlers was not likely to be shaped by the acquisition of display rules or the effects of early intervention.
The sample. As in, the children. They wanted toddlers whose raw emotional reactions wouldn’t be tainted – sorry, shaped – by adaptations they might go through as they matured. Hm.
Next paragraph… oh my….
Based on prior work [Macari et al., 2018], in the nonsocial condition, we expected that toddlers with ASD will exhibit attenuated intensity of distress compared to TD controls.
Wait – what? Based on what prior work? Let’s take a look at that. Oh, look – there’s a paper by one of this paper’s authors – Emotional expressivity in toddlers with autism spectrum disorder. What did they do? And I quote from the abstract: “Method: Toddlers (aged 21.2 months) with ASD (n = 43), developmental delay (DD, n = 16), and typical development (TD, n = 40) underwent standardized probes designed to induce anger, joy, and fear.”
So, she’s done this before. This is just another go-round. That, in itself is horrifying. Come to think of it, maybe that’s one of the reasons this study got past the ethics folks. Precedence. They did it before, they’ll do it again (as the Pep Boys radio jingle from the 1970s rings in my ears).
Onward… I could literally pick apart nearly every single sentence in this paper, but for the sake of time, let me call out the mention “…intensity of distress in ASD is expected to be higher than in the TD group”. So, intense distress was part and parcel of what they were looking to explore. Deliberately. Intentionally. And they expected it to be higher in the autistic kids, so (sarcasm) won’t it be interesting to see how our hypothesis plays out?
…we hypothesized that toddlers with ASD will display lower attention to social but not to nonsocial threat, compared to the TD group. Further, we investigated whether the groups differ in the range of emotional regulation (ER) strategies employed during the probes, and whether this effect was modulated by probe type as well as whether the groups differ in the proportion of ER strategies that are social in nature.
So, so many problems here.
First, their whole conception of what constitutes autistic “attention” is way off. They literally seem to have no awareness, understanding, or appreciation of what constitutes attention for autistic toddlers. Just looking at someone or something isn’t the full extent of attention. I personally attend to every conceivable stimulus, including sounds, feelings, smells, tastes, and the reactions of my own internal experience (yes, feels) to what’s going on. Looking at someone or something actually hijacks the full range of my information processing – which is apparently what so many autism researchers just do . not . get. That old trope about visual attention indicating awareness or engagement is so limited and limiting, I don’t even know where to start. But that’s what’s at the core of what countless researchers (as in really countless, not the “countless stakeholders” Yale invoked when they jumped to the defense of this pretty much indefensible paper) and behavior modification folks and parents and doctors and consultants and educators think makes autistic people disabled.
Don’t get me started.
But alas, my diatribe about that wouldn’t be properly understood by those folks, just as an arrangement of red flowers amid a splash of greens is not going to have much appeal to someone who can’t see those color ranges.
Let us return to the paper, my friends…
Secondly, the mention of “emotional regulation”. Ugh. Spare me. I don’t think the researchers had the rigor, the understanding, or the proper measuring tools to know what the heck they were actually seeing. Here’s the thing (I haven’t gotten to the methods yet, but I’ll give you a sneak preview) – emotional intensity (or salience, which they mention several times) is a physiological phenomenon which, in autistic people, doesn’t always register the same way that it does with NT people. But did they do any biometric measurements? Skin conductivity? Heart rate? Blood pressure? Respiratory rate? Anything like that? Nope. They were set up with:
Two video cameras mounted on perpendicular walls afforded ample views of the scene. A parent, seated within reach of the child in the testing room during the probes, was instructed to keep a neutral demeanor and refrain from interacting with the child unless in response to the child’s distress. All children received the identical set of probes in the same order: spider, stranger, masks, and dinosaur.
… Lab-TAB sessions were video-recorded and subsequently coded for peak intensity of distress (iDistress) response across facial and vocal channels, for visual attention to the threatening stimuli, and for emotion regulation strategies.
Augh! Omg, this is such awful science! You’re going to video tape people whose facial expressions you don’t understand, to begin with — or, perhaps more likely, are NOT going to react promptly the way you expect them to because, hello, processing delays… not to mention the sensory overload of trying to figure out WTH is going on around you, with all the unfamiliar stimuli, and no indication of what the correct response would be, to guide you. (I always looked for that as a kid, yes, even as a toddler, and yes, I actually have memories from when I was younger than 2 years old.) And then, you have strangers “code” those videos for what they think is peak intensity of distress?! What?! Why?!
This just fails, on ever conceivable level. And in the midst of this woefully lacking methodology, you have literally hours of footage of toddlers being intentionally frightened over and over and over again in a situation where they are literally trapped and cannot escape (or be offered any kind of indirect comfort from their parents during the experiments. When I was a kid, I was constantly scanning my environment for clues about how to handle things. The fact that parents were not permitted by the researchers to provide their kids with any indirect feedback or signals just makes it that much worse – and that much more stress-inducing.
Again, no biometrics were recorded. I can’t imagine that many of the kids would have kept them on their skin, anyway, considering how tactile defensiveness can increase under situations of stress. But even still. They were depending on the judgment of ostensibly non-autistic researchers to “code” the video footage for signs of “intensity of distress” – sorry “iDistress”.
In sum, they were looking for signs of emotional regulation (ER) without actually having a clue about what was really going on with those kids, emotionally speaking. How can you know what’s being regulated, and to what extent, if you’re only looking at outward expressions which are by definition a sort of black box to you, anyway? The logic there just… fails. Why were they not looking at actual metrics like heart rate variability, skin conductance, blood pressure, etc – all clearly established measurements of stress and anxiety? That’s perhaps the most pure measure you could possibly get about what’s really going on with those kids – wiht the caveat that autistic folks’ biometrics are going to be skewed because — hello — delayed processing, as well as differences in sensory perception. It’s just so problematic, but to not even make an attempt… I just don’t know. And to fall back on visual assessments of video tapes… Yeah… it’s appropriate to despair, right about now.
A word about the biometrics of fear. Just a quick search for “fear stress skin conductance” on Google Scholar returns 31,000 results. People have actually studied the biology of fear – why not reference those studies when coming up with ways to measure effectively? I mean, the data they got forms the foundation of their study, so wouldn’t they want the most ironclad data possible? Why not do real science, like what’s been done on real people? Then again, these are just autistic kids, so… maybe extant science about “normal people” doesn’t actually apply to us? Maybe autism researchers (well some, anyway) are convinced that they’re blazing a new and uncharted trail into the jungles of psychopathology, and all rules are off, aside from the ones they come up with, themselves.
Now, back to the paper. The Methods and Materials section of the paper starts out with the statement, “The study was approved by the Human Investigation Committee of the Yale School of Medicine and informed written consent was obtained from all parents prior to testing.” That’s even more despair-invoking. How? Why? Maybe the precedence of the other study by Macari in 2018 paved the way for this? Maybe the parents were “pitched” on the chance to solve the great “puzzle” of autism, even if it meant causing their children distress? Who knows? Apparently they ran advertisements to get participants. As for the makeup of kids, “Females constituted 26% of the ASD sample as compared to 41% in the TD group”. So, right there… I mean… they don’t understand that there can be significant differences between autistic males and females? And if there’s that big of a difference between the makeup, it’s gonna be skewed… right? Am I irrational to think so? Don’t think so.
When we get to the Procedures section, I just cringe.
All toddlers underwent an assessment of emotional reactivity to fear-inducing probes. The induction probes were adapted with minor adjustments from the Lab-TAB – Locomotor Version. The probes were designed to elicit fear through encounters with novel and potentially threatening stimuli…
Imagine coming up with “probes” like that… fear-inducing probes, no less. It’s probably just the nomenclature that’s unfamiliar to me, but somehow trying to elicit “emotional reactivity to fear-inducing probes”… in toddlers, no less… sounds just so creepy. And what is this celebrated Lab-TAB – Locomotor Version test? I’ll have to look that up, after I compose myself. But yeah… The probes were designed to elicit fear through encounters with novel and potentially threatening stimuli. Nuff said.
The did one trial of having a stranger approach the child and lean towards them for 3 seconds. Then they had a large mechanical spider crawl towards the child in three different trials. They also had a mechanical dinosaur with red light-up eyes approach the child in three separate trials. Then they had someone wear three different “grotesque” masks (vampire and Star Wars character – not sure what the 3rd one was) enter the room and approach the child 3 different times. So, 1 trial of the stranger, 3 trials of the spider, 3 trials of the dinosaur, and 3 trials with masks.
Sidenote: I find it darkly humorous / ironic / macabre that they thought dinosaurs and mechanical spiders and Star Wars characters were threatening, when if there’s anything that I’ve noticed is that my autistic friends are pretty fond of dinosaurs and mechanical anythings and spiders and Star Wars characters. On the other hand, what gives them the right to take these vaunted elements of autistic enthusiasm and weaponize them against us? Just doesn’t seem right to me.
Anyway, that’s 9 “probes”.
Each probe lasted approximately 60 s with the effective exposure to threat time of approximately 30 s. Breaks were instituted between each probe, with a minimum of 30 s and an average of 75 s (SD = 36 s) needed to ensure that the child’s affect returned to neutral before proceeding to the next probe.
So, 9 minutes of probes, 4.5 minutes of exposure. They seem to think that 30-75 seconds is ample time for a child’s affect to return to normal. Maybe it is, but I would again suggest that they can’t possibly be certain that affect equates to internal state, and 30-75 seconds may be adequate for, say, a rabbit in the wild to return to homeostasis. But not for a human being. It’s why we develop PTSD, for heaven’s sake. We don’t return to a calm state after a fight-flight incident. And if the type of incident recurs, your body gets accustomed to it, and it “kindles” the fight-flight response habitually, eventually locking in a sort of panic-anxiety subtext in your life. I don’t have time to come up with all the references here, but there’s plenty of research about it. Just check with PTSD researchers.
But the bigger issue is that they scheduled their pacing around the child’s affect returning to “normal”. How would they know? How could they know? Affect and internal state don’t always correlate. Anything short of biometric confirmation that their system had indeed settled down is just, well, lax and irresponsible.
Even if they did that, though, the fact would still remain that they were deliberately frightening toddlers. They designed a study to do it. They spent three years (2015-2018) looking for parents who would agree to letting them do it. I just can’t conceive…
Well, enough outrage. Onward.
Each video-recorded trial was coded offline for peak intensity of facial and vocal distress. … Vocal expression codes were adapted from the Lab-TAB-Locomotor Version. Each trial was coded for peak intensity of facial distress (fear, sadness) on a scale of 0–3 and vocal distress (fussing, crying, and other negative vocalizations) on a scale of 0–5. Intensity of distress (iDistress) was computed by averaging scores on intensity of facial and vocal distress across trials within each condition.
I’ll let this speak for itself. I have to wonder what it was like “coding” the videos for peak intensity of facial and vocal distress. What must that have been like? I shudder to think. They were computing intensity of distress. Like… wow. On toddlers.
I’ve already ranted about “Attention to Threat” and “Emotional Regulation”, so I’ll spare you the details. Let’s just say that, as I’ve mentioned before, this study is suspect based on the data collection alone. And the interpretation sends it even deeper into dumpster fire territory.
But they got their data! Woo hoo! Oh… except that some parents were “noncompliant” – that is, they interfered with “probe administration”. Bummer, that some of them may have felt compelled to protect or soothe their child. Now, to be fair, they don’t say how the parents were noncompliant, so it could have been anything, but I’d wager the need to protect or soothe a vulnerable 22-month-old trapped in a room with a frightening figure might have had something to do with it.
They do a whole lot of discussion about the results they got, but I honestly can’t dignify that with more discussion. Their data collection methods were … lacking. Their interpretive framework was very 19th Century – er… scientifically bereft. And the premise upon which they based the whole thing – that it’s fine to frighten toddlers to “fix what’s wrong with them” – just defies any moral sense.
And yet, success! In the Discussion, they say,
To the best of our knowledge, this is the first study examining whether in the early stages of ASD, the affected children exhibit atypical responses to social vs. nonsocial threat on emotional, attentional, and regulatory levels. The study suggests that social threat elicits less visual attention, more intense distress, and triggers deployment of a wider variety of regulatory behaviors in toddlers with ASD compared to TD controls. In contrast, nonsocial threat elicits a dampened distress response in the ASD group compared to TD toddlers, but comparable attention and ER strategy use. Even though toddlers with ASD employ a comparable or higher average number of ER strategies as TD controls, the strategies are less likely to be social. Intensity of distress to social threat does not track with either attention to threat or severity of autism symptoms.
First, there is no early stage of ASD. We’re autistic at birth. Get used to it.
Second, no kidding, we exhibit “atypical responses”. That’s what makes us so special, remember?
Third, pretty much any autistic adult can tell you why “social threat elicits less visual attention, more intense distress, and triggers deployment of a wider variety of regulatory behaviors”. It’s not rocket science. We can describe in intimate detail the inner workings and outward presentation of such phenomena. Stop traumatizing kids. Ask the #ActuallyAutistic adults.
Fourth, they literally have no way of knowing that “nonsocial threat elicits a dampened distress response in the ASD group”. They have no idea what the distress response really, truly was, because they only coded based on visuals, not on biometrics. Or just asking us.
Fifth, no kidding our ER strategies are less likely to be social. Because we have access to a wider array of stimuli and sensory inputs, and we’re so busy parsing them that who the hell has time to figure out how to interact with another (often needy, frequently clueless) person?
Sixth, like hell “Intensity of distress to social threat does not track with … attention to threat”. The fact that we’re looking away is frequently an indicator that we are terrified and we are trying with all our might to figure out how to deal with what’s terrifying us.
Based on the lacking data and the even more lacking analysis, it’s not worth our time, dear readers, to take apart the rest of the paper. In any case, the whole point of digging into it was to point out that the researchers at Yale Child Study Center were in fact performing something that’s textbook traumatizing, and which is a great study in how to produce PTSD in an individual.
Of course they would call their little tests “probes”. It fits with the overstepping of boundaries.
There are a number of factors which make an event traumatic. I’ll draw from Belleruth Naparstek’s book Invisible Heroes: Survivors of Trauma and How They Heal as a valuable reference. Some of the factors are:
Proximity – how close you are to the traumatic event. The kids were right there. They were at the center of it.
Duration – the longer the duration or the greater number of exposures within a certain period of time (the “dose”). These kids were threatened 10 times in fairly rapid succession.
Extent of Brutality – it probably didn’t seem like a big deal to the researchers, but none of us will ever know the extent for those kids. Because stress levels weren’t measured objectively.
Betrayal – imagine sitting in a room with a threat and not having your parent come to your rescue…
Threat of Dying – as above in #3, none of us will ever know if that’s something the kids experienced.
Perpetrating Violence – those who do the violence can be traumatized too. I wonder if the researchers were.
Societal Context – if a traumatic event is part of a meaningful experience (like fighting for your country), that may in fact mitigate the impact. Did those kids have that kind of context? How could they?
Unpredictability – this stressor makes things worse. Distressing events that can be predicted are less traumatizing. But not knowing… well, how could the kids know?
Injury – perhaps not applicable here.
Loss – they didn’t lose a family member or close friend, though their trust in their parents may have taken a hit.
Being Trapped – yes, they were. No agency, no control, no obvious freedom to leave. Trapped.
So, there you go, their experience meets at minimum 4 of the 11 criteria, possibly 9 or 10 of them, worst case. Bottom line, the way that experiment was set up for each kid – all of them, not just the autistic kids – was traumatizing. And that’s wrong.
You know? These folks could definitely use some education on the nature of trauma – especially for young kids (autistic or not).
Here’s a map to the Metrowest Behavioral Health Center (MBHC) in Acton MA, where some clinicians are practicing who used to be at the (now-closed) Trauma Center at JRI, where Bessel van der Kolk did so much great trauma research and education. It’s a 2.5 hour car ride. Not hard to get to. Here are the directions for them to get there: https://www.google.com/maps/dir/Yale+Child+Study+Center,+South+Frontage+Road,+New+Haven,+CT/360+Massachusetts+Ave,+Acton,+MA+01720/
They should start driving now. Book a session and get educated. Before more kids get hurt.
I mean, I just do NOT get how anyone interested in child health and wellbeaing could come up with an “experiment” like this. And certainly cannot fathom how a governing body would sign off on it. Again, there’s precedence with the 2018 paper, which details the results of a study when “Toddlers (aged 21.2 months) with ASD (n = 43), developmental delay (DD, n = 16), and typical development (TD, n = 40) underwent standardized probes designed to induce anger, joy, and fear.” If they did it before, why not do it again? They can build on their research! Woo hoo!
But at what cost?
Seriously. What cost? I’m sure the kids in this most recent study (and possibly the earlier one) have long since been reduced to numbers in the minds of the researchers. I can only hope that the people who watched the videos of the “probes” and then coded the screams and cries are feeling at least a little impacted (maybe some remorse) at having not only participated in that, but opened the door to yet more “research” later that A) builds on the flawed data and analysis of this poor excuse for science, and B) invokes this precedent to further continue this particular line of “study”. On toddlers. Trapped in a room. Frightened on purpose.
I’ll deal with the Yale response to our outcry later.
I need a nap.
So, haha! I was wrong about WordPress not letting me write without the block editor. Turns out, they have a secret way to access the classic editor, which is what I’m using right now. Because the block editor is just . so . bad. I mean, how could they…?! Well, anyway… Thanks to my buddies for looking out for me 🙂
Always nice to be proven wrong, when it works in my favor. Haha. I’m still probably going to post over at ActuallyAutistic – although I’m tempted to just do a WP install over there, so it’s easier to post. Seriously, when WP is done right, it’s quite awesome. I may do that later, when I have some free time. But honestly, I have so many sites, to begin with, adding yet another is not going to demonstrably improve my life.
Anyway, we had a pretty big storm yesterday. No’easter, as they call them, with the requisite scary radar images — that massive claw coming in from over the Atlantic. It rained for 3-4 hours, early on, then it turned to that gloppy snow… then more snow and no rain… and then a bit of rain after 7 p.m…. then more snow on top of that. And all with dropping temperatures, which makes me really glad I went out and moved snow and slush several times over the course of the afternoon and evening. If I’d just let it be, until this morning, I’d have about 6 inches of frozen-solid wintry mix to contend with.
But I got out there a number of times (2 or 3, I’ve lost count) with my shovel, and I got the deck and stairs and driveway cleared, which is huge.
I also got my generator running when we lost power, which is a whole new chapter in the Life of Me. We’ve lost power a lot, over the years, and we’ve always soldiered through. It’s funny – when we first moved here, we didn’t lose power all that often. Maybe a couple times a year? But I think as electric companies have consolidated and centralized, putting more people on a shared infrastructure, it’s made things… less robust. And we’ve been losing power more frequently and for longer periods of time.
How ironic. The more “advanced” we get, the more unreliable things become. Oh, well. I’ll just consider the technological world in a state of perpetual “beta”, since that’s pretty much how things have evolved. Nobody seems interested in actually making sure that sh*t works right, the first time they roll it out. Oh, no. If there are problems, they can wait. They’ll get fixed later, after people figure out if they’re really a problem. Ha. Well, whatever.
Anyway, we lost power last night, and I got my generator going. I just bought it about 6 weeks ago, and the house got wired to be powered from it, at the end of last month. And none too soon. I also picked up some fuel for it – the fancy ethanol-free gasoline, which is not cheap, as well as a couple of cans of high-test unleaded from the gas station down the road. I did a drill for switching over to the generator, this past week, so I wasn’t completely clueless about what buttons to push, and in what order. Good thing I did, too, because there are some… anomalies with my refrigerator that I need to account for (I have to toggle the circuit breaker in a certain way to get the thing powered up again). After all, one of the reasons I got the generator to begin with, including making sure we have heat and water, was to save all our food and not lose it, every time (often) we lose power.
So, I was all set.
And sure enough, yesterday the storm delivered on its promise to cut our power. Cut it, it did. There were the flickering brownouts throughout the afternoon and early evening, then while I was out shoveling, I saw a big flash and heard a boom! Transformer or something exploding. Our power didn’t go down, which surprised me, but later, after I’d had my shower (thankfully not during) and I was getting ready for a quick nap, our power did actually go down.
So, get out of bed, put my clothes back on, and head down to the garage to set up our backup power. I had all kinds of questions and misgivings, but in the end, I got the whole thing set up pretty well, including covering the top with some boards, so it wouldn’t get drenched, while there was still plenty of air flow around it. I also realized that the place I was thinking I’d place it is too near a low spot in the driveway. Water gathers there. It runs into that area. So, I had to move it away, so it wouldn’t be actually sitting in water – very important for an electrical source. And next time, I know where I’ll put it. Because there will absolutely be a next time.
I’m pleased. So, so pleased. I can do this. And I’ll keep doing it. Because I can. And my partner won’t be in danger, sitting in the cold and dark, trying to pack for our relocation to the hotel that had become our “home away from home”.
It’s going to warm up later to 36F — woo hoo! And it’s going to stay there most of the day. So, I’m going to give it a few hours and then go out to clear out the stuff that’s left over from last night. We also had a tree go down that nearly hit the house. Actually, it nearly hit me, too — I had to scramble to get out of the way! That was exciting. I love when that stuff happens and turns out okay. I don’t get horrified in retrospect, because I wasn’t hurt, and everything is fine, and it’s actually fascinating to me, how it all works. Science! I love to observe and be amazed by the physics of it all.
Plus, I’ve been wondering how long it would take that tree to come down. I’ve been keeping watch on it, all summer and fall long, wondering when it would come down. Now it has. Suspense suspended. And I’ll get my handy super-sharp camp saw and take it apart later.
I’m really tired from yesterday, still, but I’m having so much fun with this. I love to move snow. I love to rake my roof. I love the civil engineering aspects of it, configuring the snow so when it runs off, it goes down into the drain at the culvert, instead of out into the road. That’s important. I live on a blind curve that heads downhill pretty steeply, so if there’s ice there, bad things can happen. So, I do my part. And I have fun in the meantime.
There’s also the music. Back about 1o (!) years ago (and how time flies), I worked for a company that was headquartered just outside of Paris. And I’d have to make several trips to France, each year, as part of my job. Some would jump at that chance (and I would now, to be honest). I mean, you get to go to France and be in Europe for about a week, all paid for by the company! How excellent is that?! Quite excellent.
Unfortunately, because of the commute each day – 45 minutes each way in rush-hour traffic – and the fact that I could never, ever work from home, the trips to France were a major hardship and source of profound suffering. I couldn’t enjoy it much, because I was so exhausted and autistically maxed out, each and every day, let alone after a 6-hour flight with major jet lag setting in. I tried learning French, and I did sorta kinda okay, but I was so limited by my burnout, that I just didn’t stick.
I’d love to be able to do that again, but I’ve long since left the company, and anyway, COVID-19 just isn’t having it. Maybe when there’s a vaccine that’s proven safe and effective it will be possible again.
But in the meantime, I’m listening to the music I used to listen to while I was at that job. I’m listening to the stations that I listened to on the plane. I’m tuned in to that same vibe from before, and I’m really enjoying it. Winter is here. Woo hoo! I’m so happy. I love the cold weather, the snow, the logistics, the challenge. The limitations. Yes, the limitations. And the long nights and lazy weekends, when I can just hunker down with a hot drink and think about stuff.
Just sit and watch the snow fall. Then go out and move it around. And contemplate aspects of my life while I shovel.
Winter is my time to think. And it’s wonderful. I can listen to music. I can enjoy myself. I can recreate the vibe that I used to have, and I can do it now without being completely, overwhelmingly crushed by the demands of neurotypical tyranny. I can do it on my terms, and I don’t have to speak French to do it.
Although… I do have the bandwidth now to learn another language. Maybe I will.
Here’s a video I made of just how awful and disruptive the block editor is
what you see below is what I’m typing in the demo. you can watch the video and just ignore what’s below.
This is text I’m typing in – and it is taking a split second longer for the text to show up for me, than it used to. There must be some behind the scenes processing going on, or the UI and I dunno what other kind of configuration are not well-configured.
Help me. Now… I’m going to bold something
no! WTAF is that? Why did they create a new block? Why is there this extra text above? I don’t get it! Everytime I highlight something, it pops up that “selector”? What a waste of time and processing and attention – I should be able to just highlight something wihtout having my entire train of thought destroyed.
But no. There’s this shit. And I mean shit
oh my god. no.
The fact that I became pretty much dependent on WordPress for my blogging activity, or the fact that I thought I could trust them over the long term to provide the kind of functionality and support I’d need indefinitely.
Read the rest here: http://www.actuallyautistic.net/i-dont-know-whats-worse.php
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